Colonoscopy Update/Diagnosis

[Supermom]

My son had his second colonoscopy a couple days ago. The procudure went fine and the doctor came out to tell me the dreaded news. His entire colon was pretty much inflamed (we were hoping the inflamation would have been localized to one area). So now, the decision has been made to start Remicade next week. He was in a lot of pain with a burning stomach yesterday so she increased the prednisone dosage. He had a much better day today. She went as far as the scope would allow, getting in just a little bit into the small intestine. Said she seen a little inflamation there but we are waiting on biopsies. So she was saying the he definitely has Colitis with a possibility of Crohn's. Can a diagnosis change like that since December? I was pretty adament of wanting to know which one it was, as I know they are both inflammable bowel diseases.

In the meantime, his dad, who lives hundreds of miles from us, sent me a text regarding the diagnosis. Of course he thinks he knows everything, and is challenging me to have some other tests. He is wanting him to be tested for Celiac Disease and gluten intolerance. What is anyone's opinion on this? I have not done any research on this yet, but is this detected through a colonoscopy and would the doctor be able to tell me if that is what it was? He is also demanding that I get a dietician involved. I have talked the doctor numerous times about a certain diet and she says to let him eat what he wants (within moderation and no roughage/seeds) and if something upsets his stomach, then take out of the diet. Does anyone follow orders from a dietician? My son is such a picky eater that I know what he will and wont eat.

Any feedback to my questions would be greatly appreciated. Thanks all!

 

[my little penguin]

To determine celiac - you would need to have had an upper and lower scope- mainly upper for the celiac part- the doc needs to see the villi as well as take biopsies of the area.- can't do this for a colonscopy only.


http://celiacdisease.about.com/od/diagnosingceliacdisease/a/Endoscopy.htm


http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-diagnosis-tests

Colitis affects only the large bowel continuously. - Crohn's can too but usually has other areas involved in addition to the large bowel and had healthy sections in-between. IBD left under treated can get ugly fast- we are currently dealing with that with our son.
there is a preliminary blood test for celiac - tran IgA or something but the gold standard is upper scope with biopsy.

One other thing make sure they look at the number of EOS in the biopsies and mast cells.

here is a link:
http://apfed.org/drupal/drupal/index.php

These can cause bleeding too.

 

[Catherine]

Celiac is confirmed by biopies,but if there is not enough gluten in diet leading up to the biopies you can be a false negative. There is also a gene test for celiac disease it can used to ruleout celiac disease but can't confirm dx as you can carry the gene without having the disease

 

[Sascot]

Sorry to hear about all the inflammation the colonoscopy showed up. I remember the wishful thinking hoping they had made an error. Good luck with the Remicade.
As for his father - it might be worth getting the doctor to write a letter detailing all the findings, so that it's not just coming from you. As for Celiac - I believe you can do a blood test for that, so it shouldn't be too much hassle to have that done. I'm sure the doc would have considered that when doing the colonoscopy anyway. It would not be a bad thing to see a dietician anyway - most of us are told to give the kids anything but stop if something causes a reaction/irritation, however they can be helpful in letting you know how to work out how much calcium, iron, vitamins, etc you child is getting (plus it would appease his father)

 

[crohnsinct]

Supermom: Sorry about the results of the scope. Hopefully when the biopsies come back you will have a more definitive answer. Also hoping the Remicade brings your son relief!

 

[Farmwife]

Sorry to hear about the findings.
I'm surprised the haven't done a blood test for Celiac yet. Usually that's one of the thing they check for right away. Or at least that's what Grace's new GI said.
I hope all will go better down the road.
Farmwife

 

[kimmidwife]

Supermom,
We know how hard this is. I know when they did my daughter's colonoscopy they did a biopsy for celiac disease maybe your doctor did too.

 

[skippy111]

Celiac is a Hereditary disease caused by an intolerance to Gluten.
When a person with Celiac disease consumes Gluten, Damage to the small intestine results.

It takes years to diagnose Celiac's disease.

so, no, Chron's disease is different than Celiacs, I had a friend of mine try and tell me that I might have celiacs instead of chron's... so I asked my DR...

I agree with Sascot. The results from the colonoscopy speak for themselves..

I hope everthing goes well with your son.

 

[DustyKat]

Hey Supermom,

I'm so sorry to hear that things are worse. What a difficult and heartbreaking time for you. :hug:

A diagnosis can change like that hun when there is predominately large bowel large involvement. Unfortunately it is not uncommon for people to be given a diagnosis of Ulcerative Colitis only to have it changed to Crohn's at a later date. There is such a thing as Crohn's Colitis and this where the confusion comes in. If there is IBD inflammation in the terminal ileum then it will definitely rule out UC.

I think it is standard procedure, well it is here (Oz) from what I have seen, to rule coeliac in or out just as they do cancer when performing pathology on a specimen.

I agree that it can't hurt to have a blood test for coeliac and to see a dietician, preferably one that deals with IBD. Not only will it allow you to leave no stone unturned but it will keep his father appeased as well, less stress for you then. I would also request copies of everything...blood test results, scope results, imaging, letters etc...not only for your own benefit but I would send a copy to his father.

Thinking of you and sending you loads of luck!

Dusty. xxx

 

[polly13]

No harm to rule out coeliac disease but I agree with the other you might find they have already done that with the colonoscopy as the presentation may be different (I dont know). It is pretty standard in Ireland to rule it out in the initial stages of testing also.

If it hasnt been ruled out so far - they start with a simple blood test, however it is easy to get a false negative if the child hasnt had any gluton products recently.
I wish you the best and hopefully your lo will find some relief soon.

 

[happy]

Supermom,
It is possible for a person to have both celiac disease and IBD, whether Crohn's or Ulcerative Colitis, or some other IBD. However, Celiac and Crohn's/Colitis are diagnosed with different tests. Unless the doctor did an upper endoscopy (a scope of the upper part of the Gastrointestinal system all the way to the small intestine) as well as the colonoscopy (looking at the lower end of the GI tract) he/she will not have been able to look at and take biopsies of the areas where celiac disease shows up in the intestines.

This link http://www.celiacedmonton.ca/wp-content/uploads/2012/05/Celiac-Disease-Screening-Tool.pdf describes the symptoms and testing that is common in Canada. Do not rely on the blood test alone to rule out celiac disease; insist on a biopsy from an upper endoscopy.

As discussed above it is important that your child eats foods containing wheat prior to testing, or he may be given false negative testing.

To confuse matters more, people can still have a wheat/gluten sensitivity, without having celiac disease and the auto-immune response. These people have tested negative to celiac disease, but find that their symptoms improve if they avoid wheat/gluten.

If your son does indeed have celiac disease as well, then a dietician with experience with celiac disease can be very helpful. If celiac disease is ruled out, but you suspect wheat/gluten sensitivity, again, a knowledgable dietician can help you do a gluten/wheat challenge and then to follow a wheat/gluten-free diet.

A lot is coming at you at once. Although you probably want answers right away, everything is going to take some time. Try to take one step at a time. Do some research while you are waiting for the current biopsies and then be ready with questions for the doctor when you get the results.

You know your child the best, trust your intuition to guide you along the way.

:goodluck: